Personal assistance policy features for Independent Living:

What are the important features of a national policy on personal assistance that is to promote "living independently and being included in the community" "with choices equal to others" and to enable persons with disabilities to fulfill their duties and to enjoy their rights as citizens?
The presentation identifies the elements of the Swedish Personal Assistance Act of 1994 that have contributed most to the outcome of this widely acclaimed legislation.

Personal assistance policy features for Independent Living: the Swedish Personal Assistance Act of 1994 as illustration

Keynote for workshop at World Future Council conference "Good Policies for Persons with Disabilities"January 22-23, 2012 Vienna

Adolf Ratzka, PhD Independent Living Institute

Any policy for assistance with the activities of daily living for persons with extensive disabilities must comply with the following

Independent Living principles

Disabled people are experts on their needs

We demand the same freedom of choice that other people take for granted

We demand the same degree of self-determination

Only services based on these principles enable users to fulfill their duties and to enjoy their rights as citizens.

Services for assistance with the activities of daily living are of two types

Supply-driven services

example: residential institution

service provider is under contract from municipality or charity

fixed budget translates into fixed staff

staff decides which needs can be met

quality criteria used, if any: safe, sanitary, survival

users have no choice, forced to adjust their needs to needs of institution

users are seen and made to feel as passive helpless objects of care

Supply driven services typical for central planning economies

Demand-driven services

example: direct payments to assistance users for personal assistance

purchasing power creates market response

service providers compete for customers

competition promotes freedom of choice and quality

consumers custom-design their services according to individual preferences

consumers are assumed capable to make decisions in their own best interest.

Demand driven services are typical for market economies where users are customers.

Policies using supply-driven services do not meet Independent Living principles. One example of a policy meeting Independent Living principles is the Swedish Personal Assistance Act of 1994.